1. < Fibromyalgia

Fibromyalgia pain: Let's connect

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the 'tender spot test' several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I'm alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I've tried them all, I think), or anything, besides hobbies and such? I've tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn't help, but I'm hoping one of our members might have some knowledge that could help. I'd really appreciate it.
hugz,
Clownscrytoo

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

grandmaR | @grandmar | May 26, 2018
In reply to @sandytoes14 "@grandmar @parus @lioness @marcyk Hello friends and fellow fibro fighters, I wanted to share with you..." + (show)
@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

Jump to this post

@mamasitalucita Beautifully said, almost poetic!
I was to about 5 doctors before I found one that helped me. The shots would work for a couple of days, a week or not at all. But I kept trying and trying. At that point, surgery wasn't even a blip on the radar.
When I moved to Florida, I started with one doctor but again, he didn't help. Next, I did some intensive research. I found a pain doctor about 1 1/2 hours away (longer with traffic). Fire works, celebrate! I found someone who could actually help me. Not for a couple of days, a week or not at all. How about 6-10 weeks!!!!! No pain, normal!!!! However, when the shots wore off, back to hell!!!! This is how it was for 3 years. Then, 2 shots in a row did NOTHING!!!! I took a chance and had another one about a 1 1/2 weeks ago. It is not perfect but much better.
I decided to seek the wisdom (I hoped) of a neuro-surgeon. I could no longer stand the pain in between shots and my cervical spine joined the party after about 8 years of being pain free. My doctor just couldn't do anything about it. Anyway, I had cervical spine surgery 12 weeks ago. He replaced C5/6. Except for one spot, I was feeling FANTASTIC. NO neck pain. Unfortunately, I fell twice and inflamed my cervical spine. I now have to wait for it to calm down.
I have also begun PT for my lumbar spine for about 6 weeks. After that, using a special x-ray, I will have lumbar surgery on L4/5.
I am retired and would like to have a life without pain and more than just sitting in my chair. I am willing to take the chance.

Hoping for a painfree day for us all...….
ronnie

REPLY
Texas Freedom | @oregongirl | May 26, 2018
In reply to @sandytoes14 "@grandmar @parus @lioness @marcyk Hello friends and fellow fibro fighters, I wanted to share with you..." + (show)
@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

Jump to this post

I see in my statement below is not completely correct. Texas pain Drs are leaving their profession and going on to something else in medicine. Their hands are tied. I am going to allow him to give me shots but I tried to tell him, what about the rest of my body. I think the shots are a way to get any meds. I will take the shots ONCE and never again. They DO NOT work on me.
Does anyone know if there Medicare will continue to pay the bills, or is there a limit of how high they are willing to go.

REPLY
Texas Freedom | @oregongirl | May 26, 2018
In reply to @sandytoes14 "@grandmar @parus @lioness @marcyk Hello friends and fellow fibro fighters, I wanted to share with you..." + (show)
@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

Jump to this post

I think doctors keep making lots of appts because they have no idea what is wrong with you.i don't think doctors today have skills to help us. In the past if they CD not figure what was Wrong, they prescribed pills.

REPLY
cloe001 | @cloe001 | May 26, 2018
In reply to @sandytoes14 "@grandmar @parus @lioness @marcyk Hello friends and fellow fibro fighters, I wanted to share with you..." + (show)
@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

Jump to this post

Amen sister !!

REPLY
lioness | @lioness | May 26, 2018
In reply to @sandytoes14 "@grandmar @parus @lioness @marcyk Hello friends and fellow fibro fighters, I wanted to share with you..." + (show)
@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

Jump to this post

@grandmar Helen Ready couldn't have said it better this is why we women are fibro warriors

REPLY
grandmaR | @grandmar | May 27, 2018
In reply to @sandytoes14 "@grandmar @parus @lioness @marcyk Hello friends and fellow fibro fighters, I wanted to share with you..." + (show)
@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

Jump to this post

Right on!

REPLY
Mamacita, Alumna Mentor | @mamacita | May 27, 2018
In reply to @sandytoes14 "@grandmar @parus @lioness @marcyk Hello friends and fellow fibro fighters, I wanted to share with you..." + (show)
@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

Jump to this post

I fell, too.  Off the bed.  Ended up having to have a CAT scan.  Said every thing normal. (For me!) Just so happens, I had a regularly scheduled appointment with my Fibro doctor.  I have uncontrollable muscle spasms, and do I take Flexeril at night, when there's an issue.  He found a low dose muscle relaxer that I can actually take during the day when I have a flare going on.  So, big step upwards for me on that end.  All my symptoms are very manageable right now, for which I am so grateful.  Getting the right supplements, the right foods, the right medications can be like going through an ancient maze.  But when it works, pure Bliss. Hope you get to feeling better and have a pleasant rest of the holiday! Love and peace, Mamacita Lucita.

REPLY
andilynn | @andilynn | May 27, 2018
In reply to @sandytoes14 "@grandmar @parus @lioness @marcyk Hello friends and fellow fibro fighters, I wanted to share with you..." + (show)
@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

Jump to this post

I struggle with spasms in my lower legs and feet. Taking 20 mg. of baclofen, prescribed by my neurologist helps with this. Maybe that will help others too!

REPLY
Mamacita, Alumna Mentor | @mamacita | May 27, 2018

Baclophen helps some. My muscle spasms are so random, it's hard to just how much it actually does help. All I can say is that overall, my hard to manage, painful flares, are not as dreaded or fearful as they once were. Much, much lower on the pain scale.

REPLY
lioness | @lioness | May 27, 2018
In reply to @sandytoes14 "@grandmar @parus @lioness @marcyk Hello friends and fellow fibro fighters, I wanted to share with you..." + (show)
@sandytoes14

@grandmar @parus @lioness @marcyk
Hello friends and fellow fibro fighters,
I wanted to share with you the importance of speaking up at your doctors visit.If you are like me, you go see your pain management doctor month after month and with few exceptions he prescribes the same medicine or treatment. When I go to an appointment, I fix my hair put on a bit of lipstick and try to look nice. This month, I felt awful and couldn't do my hair, I had dark undereye circles, etc. My doctor walked in the room and instantly took a look at me and knew something was wrong. Now mind you, there have been times when I felt like dirt but still looked "presentable". Anyhow during my exam I finally told the doc how much I had areas on my back that were hurting me terribly for months. Well, I said the magic words I guess and he gave me Trigger Point Injections right then and there. I couldn't believe I had relief before I even checked out from my visit!
So my advice is this: even if you are uncomfortable, Speak Up! We all must remember to be our own advocate and that speaking up does not mean you are a complainer or a whiner. What's the old saying? The squeaky wheel gets the grease.

Jen

Jump to this post

@andielynn For leg ,feet cramps an old remedy that works is drink pickle juicie it's the vi negar in it ,so you can have Sandwich with mustard .Supplements that help are magnesium and calcium together.My Dr.gave me Mariplex prescription I use sometimes but before I had perscrip I used others they all work.

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